Straight backs don’t come cheap
Thank goodness for good insurance!
The boys have physicals for scouts every summer. When A was twelve, the doctor mentioned a slight curve in his spine, but it really wasn’t anything to worry about. I don’t recall anything being said about it the next two summers.
This summer however, the doctor was concerned and as he estimated it was getting close to a 20-degree curve, recommended we call Primary Children’s Hospital and find an orthopedic surgeon that specialized in scoliosis to see A. “But it could take months to get into a specialist…”
We called that day and amazingly were able to get an appointment with Dr. John Smith in just two weeks if we were willing to drive to his Riverton office. So in our first appointment at the beginning of August, A had a full set of chest x-rays, and within five minutes of Dr. Smith coming in to talk to us and viewing the x-rays, we were discussing spinal fusion surgery.
Um, wait, what?
Apparently our regular doctor was completely batty estimating a 20-degree curve (not the first time I’ve had that opinion of him) because A had a 51-degree curvature of his upper thoracic spine–a C-curve. Luckily he didn’t have an S-curve; his lower vertebrae were straight which is good as all of your bending, lifting, and twisting motions come from your lower back. Dr. Smith said it was called Ideopathic Adolescent Scoliosis, which basically means they don’t know what causes it, but sometimes during growth spurts, spines just don’t develop correctly.
A watch and wait approach is generally taken for anything under a 20-degree curve. Between 20 and 40-degrees (if I’m remembering correctly), bracing can be done, but that isn’t a permanent fix, it just keeps the curvature from progressing during growth spurts. Looking at A’s pelvic and hip bones, most of his skeletal growth is done so we completely missed the window for bracing. And curvatures over 50-degrees tend to keep curving at the rate of 1-degree per year. So when he’s 30, he could have a 65-degree curve.
On his x-rays we could already see how the right ribs were spreading apart and the left ones were scrunching together, which eventually would compress his lungs and all other organs in his chest cavity. So surgery was really the best and only option. But I was in shock. A, on the other hand, was completely calm and accepting of the whole idea. Even Dr. Smith remarked later that A was the probably the least anxious patient he had ever operated on.
We decided November would be a good time for surgery as it would be after our Hawaii trip but before the holidays. A would also need a full six month recovery after spinal fusion and he wanted to be ready and able to do all the scout stuff next summer.
Our regular doctor had also recommended we call Shriner’s as it would be a whole lot cheaper, but we couldn’t even get an initial appointment until October, and who knows when we would have gotten A into surgery. It was also with a different surgeon, and in doing research, we were pretty sure we already had the best guy in the business. Dr. Smith has done thousands of spinal fusion surgeries at Primary’s and we had a really good feeling about sticking with him, plus the timing worked out perfectly for A’s recovery.
Our first surgery was scheduled for Halloween, but Dr. Smith’s office had to reschedule, so on Monday, November 14, A went under the knife. It was one of those terrible, horrible, no good, very bad mornings. At least for me. DH had worked until midnight the night before, and we had to be at Primary’s at 5:45 in the morning. I didn’t have a chance to eat anything before we left and my morning sickness was in full swing that week, plus the stress and worry were not helping. What am I doing to my child?? It’s a very painful surgery and A hasn’t even had any back pain or any kind of discomfort up to this point. But we knew it was the best time to have it done so his curvature didn’t get any worse and as the doctor assured us, kids always bounce back from surgery much easier than adults do. But still, I was a mess.
A, on the other hand, did tremendously well. We were surprised when the surgeon came out to say he was done already. It went quickly and he said it could not have gone more perfectly. In our pre-op appointment he said he had to warn us of the complications, but also said he hadn’t paralyzed anybody yet and didn’t intend to start now. They had monitors on A’s fingers, toes, and brain that would register if his spinal cord was under any stress and they could immediately stop the surgery, but there wasn’t even a blip at all. Getting his initial IV in was a chore because his hands were too cold, but surgery went just perfectly.
He took forever coming out of the anesthesia though, and told us the same story about going back to the OR about three times because he didn’t remember telling us two minutes before. It was pretty funny. Then we were taken up to his room in the Neuro/Trauma unit where he was hooked up to a whole lot of devices. He had an IV, two epidurals (one pelvic, one thoracic), and a drain that drained away all the blood and gunk out of his wound. I tried not to look at it.
He should have been in the hospital until Friday, but when I got there on Tuesday morning, he was sitting up in the chair next to his bed, which was Wednesday’s goal. His nurses said most spinal fusion patients are screaming in pain just sitting up on the side of his bed the day after surgery, so they all thought he was quite the rock star! On Wednesday he walked out to the hallway and back, then spent the rest of the day in bed playing video games and getting pretty bored.
All he had to do to come home was be able to climb stairs, both up and down. So on Thursday when the physical therapist came, he was ready to do it. She wheeled him out to a stairwell and he climbed down, then up, then walked clear back to his room and said, “OK, can I go home now?” It took a good three hours to get everything signed off and ready for discharge, but then he surprised everyone by coming home a day early!
He really missed his hospital bed and his five pillows that first night, but has done so well since. He even got up and went to seminary and choir the next Tuesday because he was feeling so well, although he did panic a little when he realized he’d left his oxycodone and ibuprofen tablets at home on the counter. I rescued him, and he was glad it was then Thanksgiving break so he could rest up after that exertion. He got a little anxious when his oxycodone and valium were running low, but by the time they were gone, he really only needed ibuprofen anyway and is now down to just taking it as he feels he needs it. He’s had a few bad days, but for the most part is doing so well, although he’s been banned from walking in the ice and snow. We’re not taking any chances! And no BLT: bending, lifting (anything over 10 pounds), or twisting for six months. He’s gained a couple inches in height and his back looks so much straighter now. It’s amazing what a couple of rods and a whole lot of $$$ can do!
***Edited to add: I had heard that sometimes the bone needed to do graft the vertebrae to the rods was harvested from your hip bones, but Dr. Smith said, thank heavens, no. He doesn’t do that; that’s a more painful surgery than spinal fusion. He uses cadaver bone instead, so that’s interesting.
And the nurse in the recovery room, besides gushing about Dr. Smith, told us about her brother who had severe scoliosis as a young man in the 1960s when they didn’t have near the kinds of options for correcting it that they do today. He was always self conscious about his back with its hunch and never dated or got married because of it. Eventually he had a rod put it, but fell once and dislodged the rod and never had it fixed. To this day he is extremely hunched over, has to have oxygen because his lungs are so compressed, and really doesn’t have a good quality of life. So the nurse told A that it really was an amazing thing he’d just gone through and he wouldn’t have to worry about so many of the things her brother deals with now. I think she’s right. I’m amazed when I look at him, taller and straighter now. I’m glad we did this.